Patient data project delayed

The launch of new NHS medical records database is to be delayed after widespread concerns about consent and data security.

The Care.data database has been hailed by its supporters as a unique opportunity to create a database of millions of patients which could benefit public health, boost medical research and monitor drug safety.

Work was to start on compiling the largely anonymised records in April, but NHS England has now responded to critics by delaying its launch by six months.

Critics say many patients do not know about their right to opt-out of the system, with some warning that patients could be identified through the data.

NHS England has now conceded that its communication campaign needs to be improved. A leaflet explaining the new database and rights to opt-out were sent out to all UK households in recent weeks, but one poll by the BBC suggested most people could not recall receiving it.

The Royal College of GPs, the British Medical Association and patient watchdog Healthwatch England have all raised concerns in recent weeks.

The central database will involve taking millions of records from GP practices and linking them with hospital records.

Experts say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks as well as monitor the performance of the NHS.

An NHS England spokesman said: “To ensure that the concerns are met, NHS England will begin collecting data from GP surgeries in the autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to.”

A higher profile communications campaign is likely to follow, and could involve TV and radio adverts to get the message across.

Dr Chaand Nagpaul, of the British Medical Association, said: “We are pleased that NHS England has listened to the concerns.

“It was clear from GPs on the ground that patients remain inadequately informed about the implications of Care.data.”

He added that the BMA supported the use of anonymised data to plan and improve the quality of NHS care for patients, but said it could only be done with the “support and consent of the public”, who needed to be better informed of their rights.

Proposals which would allow the NHS to make data available to third party researchers, including academic researchers and pharmaceutical firms have yet to be cleared by NHS leaders, and will be reviewed next month by NHS England.

 

Links

GPs voices concerns on patient data

Real World Data conference – London 28-29 April

 

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